I started about 2 months ago, and went thru a similar reaction. I started a little more slowly that you did. I was able to handle 1/2 of the vitamin daily. I found that the vitamin had the largest affect on me. I added the other things in as I got used to the vitamins. Some people may need to start even more slowly. There seems to be a detox phase at first that will make you feel tired, headachy, weak, and maybe more.

You seem to have the supplements from the previous protocol. I have found the new protocol to be much more effective for me. Especially the B-12. You may want to use up what you have before you switch.

I switched to taking the supplements in the evening at first as they made me very tired. As of late, I have switchd to mornings, as I feel energized when I take them.

I am still not up a full dose, but I am having excellent results. I am feeling stronger every day, and have not taken a painkiller for almost two days now! This is the first time in 20 years for that. I sleep better also.

My guess is that the time it takes to get used to this will vary greatly. If you have been ill for a very long time, it will be more difficult to detox, so you are just going to have to hang in there and find out what it takes for your situation.

I am extremely happy with my results so far, so hang in there. Back off a little if you need to, but don't quit.

And don't forget that folic acid and folinic acid can cause paradoxical folate deficiency with tiredness one of the many possible symptoms. If it is working it can deplete potassium which can cause the same symtoms and others. So can NAC and glutathione or glutathione precursors cause folate deficiency and b12 deficiency despite taking them at the same time. Without eliminating folinic acid and folic acid 100%, as they can block at least 10x as much Methylfolate, you can know it those are the cause. And many of the "neurological" multi-ingredient supplements have NAC in them and can cause the same problems.

ygelboa - A study showed that Richvank's methylation protocol helped 70% of the people who tried it. I tried it on and off for 3-1/2 years. It always made me feel tired and not well, spacey, screwed up my digestion etc. which is why I had to keep stopping. I wasn't one of those 70%.

Four or 6 weeks ago I stumbled across Freddd's (of this board) theory that the methylation protocol actually induces folate deficiency, and that the symptoms many people experience on it are not detox, as was assumed, but symptoms of folate deficiency.

Freddd recommends elimination of all folic acid, folinic acid, n-acetyl-glyceine (NAC) and l-glutathione, and any supplements containing these such as multivitamins or B complex pills, which he says can all paradoxically contribute to folate deficiency

He recommends instead Metafolin (methylfolate) (the active form of folate), B12 in the form of methylcobalamin lozenges (not hydroxocobalamin as in Rich's formula), B12 in the form of dibencozide (adenyosylcobalamin) lozenges and l-carnitine fumarate. After reading about Freddd's experience and theory, I immediately stopped Rich's protocol and started Freddd's instead. And within a couple of days my I felt better than I have in a long time. However, it can be a little tricky as Freddd's protocol can increase the need for potassium as healing starts to occur. I did develop fatigue after initially feeling rather well, and it took me a couple of days to figure out that I probably needed potassium. I took 2 potassum tabs and by that night my energy was returning.

It's been a learning experience, I'm still playing with dosages, but overall feel better than on Rich's protocol. I haven't had any negative symptoms apart from fatigue which was resolved with potassium. So if your symptoms don't abate soon, you might consider reading about what Freddd recommends. See http://forums.wrongdiagnosis.com/showthread.php?p=191131&posted=1#post191131 for more info It looks rather complicated but if you scroll down you come to a section where you see what he recommends.

Hi Mary,
Can you describe the fatigue you felt that was relieved by potassium? I am experiencing some fatigue that I can best describe as sleepy-tired, rather than the usual weakness/flu-like fatigue that I associate with my CFS symptoms.

Hi Determined - the fatigue felt more like an exhausted fatigue. I woke up with it and it was not the result of ever-exertion, as a CFS crash is. It wasn't a sleepy tired either, more a heavy, dragging feeling, that did begin to lift several hours after I'd taken some potassiums tabs (spaced about 3 hours apart). With a CFS crash I have a certain amount of achiness that is a warning not to do anything, otherwise it will get worse. And this was just different.

You could try eating some potassium-rich food to see if it helps you. Are you doing Freddd's protocol? The potassium-deficient fatigue hit after a couple of days of feeling good. It wasn't a crash, I had still been extra careful about what I did, because I still can crash. I wish we had an easy way to tell what's going on with all of this!

I'm just starting week 6 on Rich's March 30th protocol. I got a huge boost immediately, then a gradual slide, then recently (a week or 2?) mild nausea all the time, and occasional pounding headaches. I eat a very clean diet, but I started adding lemon juice to my water, and drinking freshly-juiced greens, and the combination has cured the nausea and headaches. So I assume they are from toxins building up (now getting released quickly), and not from paradoxical folate deficiency. But it's all guesswork until I stabalize at some new level.

I'm just starting week 6 on Rich's March 30th protocol. I got a huge boost immediately, then a gradual slide, then recently (a week or 2?) mild nausea all the time, and occasional pounding headaches. I eat a very clean diet, but I started adding lemon juice to my water, and drinking freshly-juiced greens, and the combination has cured the nausea and headaches. So I assume they are from toxins building up (now getting released quickly), and not from paradoxical folate deficiency. But it's all guesswork until I stabalize at some new level.

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HI Madie,

I would vote for paradoxical folate deficiency. It doesn't happen with the first doses of folic or folinic acid. It often takes some weeks to build up to a problem. Paradoxical folate deficiency symptoms are almost always called "detox". Also low potassium could be the problem. Again it is usually called "detox".

Freddd, here's my thinking. (1) I tried potassium a week ago, because the posts about possibly dying from low potassium frankly terrified me. No matter how I split it up through the day, it made me markedly dizzy, especially rising from lying down. (2) I don't want to give up on Rich's protocol until/unless I'm sure it's not working, and I can't tell yet. It's incremental, but I'm better than when I started, and I was on a slide 6 weeks ago. I thought that if paradoxical folate deficiency kicked in, I would feel worse by now (?). (3) Why would the juicing fix symptoms of paradoxical folate deficiency, rather than my assumption that it's helping move toxins out? (4) Your protocol requires a sharper brain than what's in my skull at the moment. Getting started is easy but managing whatever happens once I've begun - well, see (1), terror, above.

The average time to start feeling better on Rich's protocol is 5-6 weeks in. I'm at the beginning of week 6, and of course "average" doesn't mean everybody gets that. If I stay where I am now or improve, I plan to keep trying this for at least another month. If I start to slide, you will certainly hear from me.

I greatly value Rich's and your input, and appreciate the time you both spend helping us through this healing process. Thanks for jumping in with your ideas.

Freddd, here's my thinking. (1) I tried potassium a week ago, because the posts about possibly dying from low potassium frankly terrified me. No matter how I split it up through the day, it made me markedly dizzy, especially rising from lying down. (2) I don't want to give up on Rich's protocol until/unless I'm sure it's not working, and I can't tell yet. It's incremental, but I'm better than when I started, and I was on a slide 6 weeks ago. I thought that if paradoxical folate deficiency kicked in, I would feel worse by now (?). (3) Why would the juicing fix symptoms of paradoxical folate deficiency, rather than my assumption that it's helping move toxins out? (4) Your protocol requires a sharper brain than what's in my skull at the moment. Getting started is easy but managing whatever happens once I've begun - well, see (1), terror, above.

The average time to start feeling better on Rich's protocol is 5-6 weeks in. I'm at the beginning of week 6, and of course "average" doesn't mean everybody gets that. If I stay where I am now or improve, I plan to keep trying this for at least another month. If I start to slide, you will certainly hear from me.

I greatly value Rich's and your input, and appreciate the time you both spend helping us through this healing process. Thanks for jumping in with your ideas.

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Hi, Madie.

I hope you will hang in there for a while longer. It's difficult to say for sure whether your symptoms improvement from the lemon juice and juiced greens was due to better detoxing, or increased potassium intake (lemons and greens are both high in potassium) or to adding more folate with these things. Some people have tried activated charcoal and gotten relief from symptoms that way. In those cases, I think it is more clearcut that binding and taking out toxins is involved.

With regard to "paradoxical folate deficiency," I don't think that is likely with the revised simplified protocol, sine there isn't much folic acid in it relative to the chemically reduced,active folates. As far as the induced potassium possibility is concerned, I think that is less likely on a protocol that uses hydroxocobalamin, because the cells remain in control of how much of the active forms of B12 are produced. When large dosages of the active forms are supplied directly by a sublingual or injected route and large dosages of methylfolate are taken orally, I suspect that the cells lose control of the rate of flow in the methylation cycle, which in turn is coupled to the folate metabolism, and the result may be that cell proliferation occurs more rapidly than normal. Because potassium is the most abundant inorganic cation (positively charged metal ion) in the cells, rapid cellular proliferation would place a big demand on potassium.

I understand that Freddd needs to treat himself this way, because his cells are not able to convert hydroxocobalamin to the active forms of B12 very well, apparently for genetic reasons. But for people who do not have this issue, going a little more slowly by using hydroxocobalamin may help to avoid the risk of a rapidly falling potassium level in the blood, which can cause problems with regulation of the heartbeat.

Not to be an alarmist, but if the high-dose active B12 treatment is indeed accelerating cell proliferation, I wonder what would happen in a case where a person had a cancer beginning, which they did not know about. Would this type of treatment accelerate the growth of a tumor? It is known that cancer cells have larger numbers of transcobalamin receptors than normal cells, so they apparently have a higher demand for B12, perhaps because they undergo rapid cell proliferation. Again, I'm not trying to alarm anyone, but I think this is something to consider, given the evidence indicating rapid potassium drops with this type of treatment.

There has been a lot of talk about detox, so I will share my experience.

i started the methylation by just taking the vitamins first. I started with one, but needed to back down to 1/2 a tablet a day.
I soon noticed that I was coughing up pflem from my throat. My throat has been a bright red color for over 40 years. After a couple of weeks, the color in my throat began returnning to normal. There is still some red left, so I am not done detoxing, but I am going in the right direction.

There may be other things going on, but this one is easy to see and understand. I am still early in the process, and not up to a full dose yet, so I remain hopeful for better things to come.

I hope you will hang in there for a while longer. It's difficult to say for sure whether your symptoms improvement from the lemon juice and juiced greens was due to better detoxing, or increased potassium intake (lemons and greens are both high in potassium) or to adding more folate with these things. Some people have tried activated charcoal and gotten relief from symptoms that way. In those cases, I think it is more clearcut that binding and taking out toxins is involved.

With regard to "paradoxical folate deficiency," I don't think that is likely with the revised simplified protocol, sine there isn't much folic acid in it relative to the chemically reduced,active folates. As far as the induced potassium possibility is concerned, I think that is less likely on a protocol that uses hydroxocobalamin, because the cells remain in control of how much of the active forms of B12 are produced. When large dosages of the active forms are supplied directly by a sublingual or injected route and large dosages of methylfolate are taken orally, I suspect that the cells lose control of the rate of flow in the methylation cycle, which in turn is coupled to the folate metabolism, and the result may be that cell proliferation occurs more rapidly than normal. Because potassium is the most abundant inorganic cation (positively charged metal ion) in the cells, rapid cellular proliferation would place a big demand on potassium.

Best regards,

Rich

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Rich, thanks for this cogent explanation of the B12-potassium connection. I could switch to activated charcoal to test the detox/potassium question, if it matters. I was scared to use it because of the word "binding." The last thing I want to do is gum up the works. Do you all mean 'binding' in the chemical sense only?

I seem to have lost my taste for meat. Is there any danger of my going vegetarian (I know how to do it properly), since I'm taking the B12 drops?

Remember that article you posted recently, about your protocol, with your picture in it? It finally gave me something bite-sized I could send around to my family, to give them some idea of this being a real illness, with real protocols, with real doctors and researchers. 2 didn't respond, but 3 engaged me in profoundly validating conversations. Wouldn't have happened without you!

Rich, thanks for this cogent explanation of the B12-potassium connection. I could switch to activated charcoal to test the detox/potassium question, if it matters. I was scared to use it because of the word "binding." The last thing I want to do is gum up the works. Do you all mean 'binding' in the chemical sense only?

I seem to have lost my taste for meat. Is there any danger of my going vegetarian (I know how to do it properly), since I'm taking the B12 drops?

Remember that article you posted recently, about your protocol, with your picture in it? It finally gave me something bite-sized I could send around to my family, to give them some idea of this being a real illness, with real protocols, with real doctors and researchers. 2 didn't respond, but 3 engaged me in profoundly validating conversations. Wouldn't have happened without you!

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Hi, Madie.

I'm glad Dr. Nathan's article was helpful in communicating with your family. He has a way of writing very clearly.

I did mean chemical binding, but it is true that some people experience constipation when they take activated charcoal. Dr. Yasko recommends slurrying it with a magnesium supplement (such as Milk of Magnesia) to prevent this.

I think it's O.K. to go vegetarian, so long as essential nutrients that are low in plants are supplemented. B12 is the main one, but there are some minerals as well, so I think that taking a multimineral (such as included in the simplified protocol as part of Dr. Yasko's multi) would be important. There are three minerals that humans need, and plants do not. If they happen to be in the soil in which the plants are grown, they will be carried into the plants, and humans will get them if they eat the plants. But if they are low in the soil, the plants will still grow fine, but eating the plants won't supply enough of these minerals to humans. They are iodine, chromium and selenium. This is the reason iodine is added to salt. Chromium is important as a cofactor for insulin in bringing glucose into the cells. Selenium is important for glutathione peroxidases, and also for the conversion of T4 to T3 in the thyroid hormone metabolism, as well as some other roles. Also, selenium deficiency favors some of the viral infections, including Coxsackie, HIV and the hepatitis viruses. It also figures into Keshan disease in China, which affects the heart. It's also important to get enough protein and the right balance of amino acids, which is difficult to do with plant sources only. They tend to be higher in arginine and lower in lysine, which can encourage herpes family viral infections, and they are also low in cysteine, which is needed to make glutathione.

In studying individual cases of ME/CFS over the past 15 years, I have run into a few cases in which the people were vegetarians or vegans before their onset, and I have suspected that the above nutritional deficiencies might have been at least partly responsible. As you know, some vegetarians don't pay enough attention to the balance of nutrients. (Of course a lot of meat eaters don't, either, but there is more "forgiveness" in a diet that contains meat, eggs and/or dairy.) But if the essential nutrients are included either in the diet itself or with supplements, I don't have a problem with people following a vegetarian diet.

I believe that juicing green veggies makes the blood ph more alkaline ..which (crude paraphrase here..) slows down detox. I heard Dr Klinghardt talk about this in one of his presentations..about how you can only chelate metals in an acidic environment..or something to that effect.

So perhaps your juicing put a brake on your detoxing that was induced by the supps? Coffee enemas and castor oil packs are also recommended as aids for healing crises by some alternative doctors.

Personally, I came to the conclusion that methylation is too harsh on teh body until you have knocked down the toxin/metal burden a bit.

Bear in mind, that John (poster above) has done months of Valcyte ....and many others have done months of antivirals etc.. before doing methylation.. just thru happenstance.. hence they may tolerate it better.

Don't know what yr circumstances are ....just throwing that out there FWIW. Not saying I'm right. Also I reserve the right to change my mind and change it back again....

I hope you will hang in there for a while longer. It's difficult to say for sure whether your symptoms improvement from the lemon juice and juiced greens was due to better detoxing, or increased potassium intake (lemons and greens are both high in potassium) or to adding more folate with these things. Some people have tried activated charcoal and gotten relief from symptoms that way. In those cases, I think it is more clearcut that binding and taking out toxins is involved.

With regard to "paradoxical folate deficiency," I don't think that is likely with the revised simplified protocol, sine there isn't much folic acid in it relative to the chemically reduced,active folates. As far as the induced potassium possibility is concerned, I think that is less likely on a protocol that uses hydroxocobalamin, because the cells remain in control of how much of the active forms of B12 are produced. When large dosages of the active forms are supplied directly by a sublingual or injected route and large dosages of methylfolate are taken orally, I suspect that the cells lose control of the rate of flow in the methylation cycle, which in turn is coupled to the folate metabolism, and the result may be that cell proliferation occurs more rapidly than normal. Because potassium is the most abundant inorganic cation (positively charged metal ion) in the cells, rapid cellular proliferation would place a big demand on potassium.

I understand that Freddd needs to treat himself this way, because his cells are not able to convert hydroxocobalamin to the active forms of B12 very well, apparently for genetic reasons. But for people who do not have this issue, going a little more slowly by using hydroxocobalamin may help to avoid the risk of a rapidly falling potassium level in the blood, which can cause problems with regulation of the heartbeat.

Not to be an alarmist, but if the high-dose active B12 treatment is indeed accelerating cell proliferation, I wonder what would happen in a case where a person had a cancer beginning, which they did not know about. Would this type of treatment accelerate the growth of a tumor? It is known that cancer cells have larger numbers of transcobalamin receptors than normal cells, so they apparently have a higher demand for B12, perhaps because they undergo rapid cell proliferation. Again, I'm not trying to alarm anyone, but I think this is something to consider, given the evidence indicating rapid potassium drops with this type of treatment.

Rich - you've made my life really easy! I know about combining foods to get all the amino acids, and you've simplified the process by telling me exactly what to focus on. I don't mind eating some meat/fish if I have to; it just doesn't taste good right now. I was a vegetarian for many years starting in my 20s, and I'm positive I didn't get B12. I've often wondered if that set the stage for my illness.

Aquarius - You can't win in this game!!! There's a whole school of thinking that says an alkaline system cures everything! Whatever. In terms of the detox, maybe I just made it up that green juices would help. Oh, my memory.... At least it helps keep everything moving.

I went on this protocol full-strength and that hasn't been a problem. My CFS is moderate - most people think I'm 'normal,' but don't know that I'm very careful about how much I do, what I eat, etc. I haven't been thrown into a healing crisis by any stretch - just mild nausea all day long and a crashing headache one morning - I started juicing that day. I guess I could stop juicing for a few days and see what happens. It's just a zucchini, a cucumber, a lot of kale, and a handful of watercress. If I get the nausea again, I can use activated charcoal instead of juicing to be sure I'm allowing the detox while moving the toxins out. Thanks for this idea!

ps FYI I get comprehensive nutritional information at nutritiondata.self.com

Hi rich,
This issue of taking large does of active forms of folate has come up before. What would be considered a large dose ? I think I asked about this before but didn't see anyone respond.

I know methylb12 is sold in at least 5mg dosages and possibly higher so it would be conceivably easy for someone to be taking this amount

GP

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Hi, globalpilot.

Sorry that I failed to answer your question before!

In the treatment of ME/CFS, I regard a high dosage of folates as something considerably above the RDA level for folate, which is in the 400 to 800 micrograms per day range.

Also, in the treatment of ME/CFS, I tentatively regard a high dosage of active forms of B12 given sublingually or by injection as something in the tens of milligrams per day range. These are approximate numbers, and I'm not able to get more specific because we don't have enough clinical data.